October 2015
Newsletter

Dear Friends,

On September 22 2015, we hosted our first ever Children’s Palliative Care birthday party at the Thapovan Heritage Home, Kovalam. From here on, we will host 4 such parties a year and celebrate the lives of our youngest, bravest patients and their extraordinary families. Each child and sibling was given a present after we asked them and their parents what they would like, instead of us choosing what we thought appropriate.

This would not have been possible without the generous contributions made by 13 very special people, some of whom insisted on giving double the ask. Thank you for sending across resources, making party decor for us from scratch, sending things you thought we might need from other countries and carrying things from one city to another for us. There are no words that can ever adequately convey the depth of our gratitude.

I want to tell you something else here: the owner of the resort joined us halfway through, made a further contribution of his own and then presented us with an additional envelope. This envelope contained donations collected by the service staff there as a gesture of solidarity and support for our children.

And then… When the time came to settle the bill with them, we were told there was none. This was after the resort fed 65 people some great food, gave us the whole place to use, spared every staff member for anything we might have needed, gave us a room for some of the sicker children to rest…and did all of this with big smiles and enthusiasm.

Oh wait. Before you think that was it, it turns out that it might very well be the last season for this beautiful resort because their land is being acquired to make room for the proposed port in the area. At a time when most people would be worried for their jobs and future, these people chose to share what they had with us and told us that this was probably the best farewell event for them as well.

I hope that restores some of your faith in humanity because it certainly overwhelmed us all, brought us to tears and cracked our hearts further wide open. Send your love and good wishes to these beautiful people at Thapovan. They only deserve good things to happen for them.

The funds that have exceeded the budget have been placed in a reserve fund for our children, as specifically requested by all our contributors.

To our donors, our well-wishers, supporters, volunteers and friends, from all of us at Pallium India – all our love and infinite gratitude.

Ms Katherine Pettus writes to say that Mr Diederik Lohman of Human Rights Watch did the palliative care community proud on 28 September 2015 at the Human Rights Council on a panel organised by the Global Commission on Drug Policy to release their new report, which will be online soon.

The panel was sponsored by Senegal, Switzerland, and Uruguay, and chaired by Mme. Ruth Dreifuss. The topic of access to controlled medicines has had a lot of airtime this past week, also at the CND, where WHO participated in a side event organised by Norway and Australia, in the meeting room of CND itself, just before the session.

Ms Pettus adds, “I literally cannot count how many member states at both CND and the HRC have now said that improving access to controlled medicines is a human rights priority and must be addressed at UNGASS2016.

Cheers to all of you for your advocacy work, and congratulations to Diederik for his very moving presentation yesterday, which brought the voices of patients and families to the Human Rights Council.”

We join Katherine, dear Diederik, to congratulate you and to thank you.

Dr Odette Spruyt, Founder of Australasian Palliative Link International (APLI) and a dear friend of Pallium India, received the award for Innovation in Palliative Care at the Palliative Care Australia awards on September 3, 2015 for APLI’s Hamrahi program.

Project Hamrahi, a collaboration between APLI and Pallium India, is a program in which a doctor-nurse team from Australia / New Zealand builds a long-term relationship with one palliative care centre in India that Pallium India has catalysed or works with. The academic and cultural exchange has been of tremendous impact in several sites. Congratulations and thank you Odette.

With rising costs, our Trivandrum Institute of Palliative Sciences is struggling to make ends meet.

We have an educational support program for the children of our patients. These children have been forced to drop out of school when disease ravaged the family. We provide financial support to complete their education, till they qualify from a course that helps them earn for their family.

For this year, we need ₹ 15 Lakhs (US$ 22,800). For example, right now, we have two girls who need to start on their nursing education, next week, and we need your help.

If you or a loved one, some day, happen to have a health problem resulting in severe pain – whether it be for a day or for a lifetime – you have a right to demand pain relief. It is a human right. Several documents have, in the past, laid emphasis on it. (Cape Town Declaration (2002) [i], the European Committee of Ministers (2003) [ii] , the International Working Group (European School of Oncology)(2004) [iii] and the Korea Declaration (2005) [iv].)

While this right is accepted in the case of adults, it is oft forgotten in the case of children. International Children’s Palliative Care Network (ICPCN) informs us of a recent declaration by the Special Rapporteur on the right to health emphasizing the child’s right to palliative care.

With the palliative care day coming on, its theme being Hidden Lives, Hidden Patients, the hidden suffering of children should be on our collective conscience. Thank you, Joan Marston, and thank you, ICPCN, for reminding us all of this.

[i] Sebuyira LM, Mwangi-Powell F, Perira J and Spence C. The Cape Town Palliative Care Declaration : Home-Grown Solutions for Sub- Saharan Africa. J Pall Med (2003) 6; 3: 341-343. [ii] Council of Europe Recommendation 24 of 2003. Adopted by the European Committee of Ministers on November 12 2003. [iii] Ahmedzai SH et al A new international framework for palliative care. European J of Cancer 40 (2004) 2192-2200. [iv] The Korea Declaration. Report of the Second Global Summit of National Hospice and Palliative Care Associations, Seoul, March 2005. Available at www.hpc-associations.net.

The Indo American Cancer Association and John and Editha Kapoor Charitable Foundation, in association with Trivandrum Institute of Palliative Sciences, are offering scholarships to practising doctors and nurses, who are interested in learning fundamentals of Palliative Care.

The scholarships are offered to 12 most deserving candidates every year, for the following courses:

6 weeks Certiﬁcate Course in Palliative Medicine

6 weeks Certiﬁcate Course in Palliative Nursing

The details of the training centres where these courses are offered are given below. Please contact the respective training-in-charge for application details.

As part of Members’ Recognition Month, International Association for Hospice and Palliative Care (IAHPC) will be giving a prize in two categories: Recognizing Loyalty (open to current IAHPC members who have kept their membership active for at least two consecutive years by October 31, 2015) and Increasing Membership (open to current IAHPC members who bring the highest number of new or renewed members until October 31, 2015).

The prize will be an IAHPC Traveling Scholarship or Traveling Fellowship of $2,000.

SVYM is a development organization engaged in building a new civil society in India through its grassroots to policy-level action in Health, Education and Community Development sectors.

SVYM has always been supportive of palliative care and has been a partner in our efforts to create the National Program in Palliative Care as well as in Amendment of the NDPS Act of India. Congratulations, SVYM!

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.
If you are interested, please write to us: info@palliumindia.org
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We are happily accepting toy donations for our weekly children’s palliative care clinic. Certain specifications need to be considered before sending the toys across, due to the nature of the children’s illnesses.

Kindly avoid toys with small breakable parts, anything with batteries, toys with sharp edges, regular sized Lego pieces, jigsaw puzzles with small pieces, games involving liquids (like the ones that shoot rings onto sticks at the press of a button), stuffed toys that have fine hair and fluff, etc.

If you are interested in sending something across, do call us (+91-9746745497) or write to us:info@palliumindia.org. Thank you very much!

In another step forward, the Journal of Pain and Palliative Care Pharmacotherapy now has a page on the website where all the narratives published so far can be accessed.

If you are in any way connected with palliative care, you must be having a story in you, that touched your heart. Do please put it in writing and send it to us: info@palliumindia.org. You get an indexed publication to your credit. And also the satisfaction of having helped the cause. Read more here.

Here are some of the narratives that have been published:

Through the Eyes of Child: Mary Macey’s reflection on her childhood and adolescence, after losing her mother and how palliative care brought her experience into focus.

When Two Worlds Meet: Lyndsey Brahm writes about the cultural immersion that she experienced when she visited the east from the west.

They Suffer in Silence: Savita Butola writes about the intensity of grief, related to life-limiting disease in the developing world.

PARTING SHOT

My friend, who now has cancer, sits in front of me smiling. We have been talking about things deep inside her. I ask her, “Are you afraid?” She hesitates a moment and then says, “Yes.”

“What are you afraid of?” I ask. She is silent.

“Is it the cancer? Is it the treatment? Or suffering? Or death?” She continues to smile. And then she says, “I am not afraid of cancer. But I am afraid of the suffering that may come with treatment. I am not afraid of death. But I am afraid of being dependent.”

Indeed, when we go deep into it, none of us wants to be a burden to others. Nevertheless, that is one thing that 85-90% of us – the ones that are not blessed with a sudden death – will have eventually to deal with.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.